Fear, to a great extent, is born of a story we tell ourselves, and so I chose to tell myself a different story from the one women are told. I decided I was safe. I was strong. I was brave. That nothing could vanquish me. Insisting on this story was a form of mind control, but for the most part, it worked. Every time I felt something horrible cohering in my imagination, I pushed it away. I simply did not let myself become afraid. Fear begets fear. Power begets power. I willed myself to beget power. And it wasn’t long before I actually wasn’t afraid.
Recently I’ve received several messages from parents of kids or babies with hydrocephalus, asking if I have any advice for how to proceed and support their children, with all the uncertainty and challenge that lay ahead. This question is one that I get often. I usually point people to my website, where they can read more about my story and the various treatments that we use to manage my health, and where I often blog about the emotional and mental toll that this condition can have on the patient, and everyone involved.
But the best advice I have to offer is to not be afraid.
Don’t be afraid to ask questions. They say that nobody has ever died from being too curious. Understanding that hydrocephalus is a complicated and totally frustrating condition to treat, approach your doctors with questions that clarify what their game plan is. Even if there is no clear answer to what’s going on during a time of illness (because that is often the case, unfortunately), knowing what the potential timelines and possible treatment paths will be will help you to prepare, and feel more at ease.
Don’t be afraid to know as much as you possibly can about hydrocephalus, even if it’s overwhelming. Knowledge is powerful, and learning could lead you to a path of treatment that could change your life.
Don’t be afraid to keep searching until you find a team of medical professionals that you can trust and communicate with. I learned this from my parents, who have always pushed for the absolute best in medical care for myself and my sisters. If you see a physician, and feel that they aren’t a good fit for you, just keep looking. Life with hydrocephalus is a long and winding road, and you are going to be in it for the long haul with your doctors and therapists. Even if you don’t have a lot of complications, it’s important to have that team assembled and established, just in case things change.
Don’t be afraid of brain surgery. The alternative of being sick with a malfunctioning shunt (or worse) is much harder than healing from surgery. This is something I tell parents over and over again. It’s really hard when your child is young, and/or non-verbal, to understand what they are going through medically when the shunt isn’t working properly. Guilt and overwhelming sadness creep in as the word “surgery” enters the discussions. But never make decisions about surgery based on fear. Relief is so precious, and life is just on the other side of that difficult decision.
Don’t be afraid to work at being healthy in every way you possibly can. My team and I preach this multi-disciplinary care approach to wellness, and I do my best to lead by example. Work at the mental and emotional battle as well, and seek help in this area if you need to (this goes for both patients and caregivers). Exercise, various therapies, diet, and lifestyle will not cure your hydrocephalus, but can greatly improve your overall quality of life.
Don’t be afraid to live and love between the madness. Make goals and push to achieve them. Work and enjoy your career, if you are able. Love your friends and family, and those in your support system. Let your life be an example of rising above the challenge, without hydrocephalus becoming your only identity.
And don’t be afraid of what lies ahead. All we ever have is the present moment. Seize it and feel every emotion, sensation, and minute that passes, good or bad. We only have to live each difficult moment once, but we also only get one shot at all of the beautiful moments in life.
Stay present. And don’t let fear define your journey.
Stay in the arena,
And I hear them saying,
You'll never change things
And no matter what you do
It's still the same thing
But it's not the world that I am changing
I do this so, this world will know
That it will not change me.
I wrote these words to the Garth Brooks song The Change on a post-it note, and put it on my desk when I went back to work a few weeks ago, five days after my latest shunt revision surgery. I needed the reminder. My sixteenth surgery overall, and the sixth in just over a year and a half, happened fast and hit me like a freight train. I had been feeling pretty bad for about 6 weeks, but still functioning until the last weekend in August, when my brain decided it had enough. I suppose I should have been prepared for history to repeat itself, but that’s just not my nature, I guess. We only had three months to heal from the previous surgery, which just doesn’t feel like enough time. However, again and again, my body proves to be strong and resilient. I get through what’s needed, and start moving back towards my own brand of normal in as little time as possible. The hard work we’ve put into my rehabilitation and strength training this past year has been credited with my quick recoveries, and I am eternally grateful for my team.
Recently I’ve had some interesting feedback in regards to me sharing my experiences with hydrocephalus on a public platform, and on social media. It seems that there are some people who don’t understand how and why I push myself so hard, and why someone who looks perfectly fine in photos is going through this much brain surgery in such a short time. As a mentor to young girls with hydro, I’ve had so many discussions on this subject; balancing a condition that is painful and dangerous with the fact that it is often invisible. Mentally, it’s a very lonely and isolated place to hide the suffering, but often it is easier, and sometimes it’s necessary. So, the question rises, why share? It’s only going to make people uncomfortable, and become your identity. Why would you want that? Is it for attention? Or likes? Or comments?
With all due respect, I don’t share all of the painful moments. For one thing, I don’t think it’s necessary, and it’s not me. I’ve chosen a life of not outwardly showing the physical pain I’m in, until things are really bad. I have been blessed with an amazing life, with incredible people in it, and I would rather share those things and keep the focus on moving forward. And I don’t want or need the attention that comes from posting about the highs and lows of life with hydrocephalus. But yes, I understand that it’s hard for people to understand why.
I share my life journey for a few very specific reasons:
I am sorry if the photos, posts, and stories of my condition and surgeries are painful to read and see. Truthfully, they are painful for me to write and share. Many times, I’ve had second thoughts before making posts regarding my hydrocephalus, and have gone through some pretty dark times, wondering if I am doing the right thing in being as open as I have been. But I press on, knowing that if each blog or post reaches just one person… someone who needs to know they’re not alone, it will be worth it.
The Merriam-Webster Dictionary defines the word “advocate” as a person who argues for or supports a cause. In addition to advocating for this cause, I aim to prove to myself, my husband, family and friends, and the whole world, that I can and will get through these experiences, and remain proactive and aggressive. Even on the days when I’m beaten down and negative, I will stay in the arena, and battle back towards the light, seeking peace.
I do this so this world will know, it will not change me.
In relentless pursuit,
Here's a link to The Change, by Tony Arata, who wrote it. #musicheals
My name is Amy but friends and family call me Am. I am a lover of dogs, good whiskey, and strength training. I'm a brain surgery survivor (x31), a fiddle player, a construction designer, and a boxing enthusiast. I have six real siblings, and five fake brothers. I love deeply, and consider my close friends to be family.